An alliance has been launched to explore how health data can be best collected and managed.
The UK Health Data Research Alliance will look into the best ways to design, use, collect, manage and analyse health data in a responsible way for clinical trials, medical research, and innovation.
It will bring together academics and health data specialists, with Health Data Research UK and NHS Digital being the first partners to join.
Sarah Wilkinson, chief executive of NHS Digital, said: “At NHS Digital we are very excited about the potential for our partnership with HDR UK, which is based on a commitment to deep collaborative engagement and co-creation of all aspects of the infrastructure necessary to foster innovation in Life Sciences in the UK, from data acquisition and management to data platform design and delivery to ethical governance of health and care data.
“A dynamic partnership between the NHS, academia and industry is critical to create the necessary environment for the sector to continue to thrive and to maintain its status as a world leader.”
The Alliance aims to make health data more accessible and improve data quality in order to build a more innovative and efficient health and care system.
Currently, only a fraction of NHS and research data is easily accessible to researchers.
Targets for the Alliance include building a set of governance policies and standards to open up data, but still ensure that it is safe, secure and only shared where there is an appropriate legal basis.
Lord O’Shaughnessy, Parliamentary undersecretary of state for health, said: “Using health data for research has the potential to deliver solutions to the greatest healthcare challenges we face.
“This new alliance brings together the unique data assets across the NHS, and allows access to them by the research community in a safe, secure and ethical framework. From this will flow new treatments and insights which will transform outcomes for patients.”
This news follows six sites across the UK being given a share of £54m funding to address challenging healthcare issues through the use of data science.
The sites will work as foundation partners with Health Data Research UK.
12 December 2018 @ 14:36
I am sure that a solid programme is being set up to manage data and many other aspects. Track records are difficult to recover from. We need to focus on getting a credible legal policy and process, as it was cumbersome on the embed consortium.
We must leverage other industries, while accepted that health is different. We need to intersect Cloud technology, patient permission, data governance and wider public / private sector experience. We need to define the benefits potential better and use future developments to oil the wheels of the current barriers
12 December 2018 @ 14:55
Well said Bob. Suggest a discussion with the European Connected Healthcare Alliance as they are working on the same thing in many markets. Call me as I can introduce you. regards Tim
11 December 2018 @ 18:40
Data for the asking not the taking – Have we learnt nothing from care.data. Forget the disingenuous “appropriate legal basis” and just ask for citizens consent.
An open honest approach that recognises the risks will have people donating their data for the greater good
11 December 2018 @ 10:13
Sounds like a great idea for innovation and transformation
11 December 2018 @ 01:58
“Targets for the Alliance include building a set of governance policies and standards to open up data, but still ensure that it is safe, secure and only shared where there is an appropriate legal basis.”
When the NHS builds governance policies they “open up data” but they do NOT ensure that it is “only shared where there is an appropriate legal basis”. They have a well established track record of duplicity and flagrant contravention of data protection law. This will never change. If NHS Digital is involved, run for the hills!